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Feelings about colostomy

Posted by crossley8, on Mon Jan 27, 2020 12:04 pm

Hi, everyone - I have a question. Do those who have had their ostomies for more than 2 years go through stages in terms of your feelings about them? I am starting my 3rd year with a permanent colostomy. The first year I was very ill for about 6 months and had a great deal of trouble learning to change the pouch, though I was always able to empty well. I was using a Convatec pouch. Then, the 2nd year, I started getting lots of leaks and odors. I went to the ostomy nurse and she discovered 2 large hernias. I changed to a 2 piece Hollister pouch and all was fine. I am scheduled to see a surgeon at the medical school about the hernias, though I am hoping I can just live with them without surgery. Anyhow, lately, I have developed a huge resentment about having a colostomy. It's not as bad as it was the first 6 months, but it's bad enough. I am living with it, but my question is, is this normal? Do your feelings about your ostomies change over time and go up and down? Many thanks for any help.

Reply by Daanders, on Mon Jan 27, 2020 12:21 pm

I have only had mine for 11 months. And I do have my days also. Some days I really regret it , Then some days are better.

Reply by Clockman, on Mon Jan 27, 2020 12:27 pm

Hi,colosomies require alot of getting use to. I used a pouch for years do to a failed kouch pouch. Not sure of your age but I would certainly look into a BCIR SURGERY if you are a younger person. I had one done about 15 years ago. It requires no pouches or waffers. Noting external. Pouch is made out of your own bodies intestines. It requires you to intubate a catheter into the stoma to drain it. At first 5-6 times a day. Now I probly need to intubate 3 times a day. Only wear a 3x3 bandage over stoma. Nothing else on exterior. I do not understand why this is not the standard for all of us please but a lot of doctors are resistant to it. For me it changed my life. No worries about the bag coming loose, leakage, and I have complete control as to when I need to empty it. Not like a pouch that one is full you better get it emptied before it blows out. I had mine done in Pasadena Florida at palms of Pasadena hospital by Dr Renkee. Although I had to eat antibiotics for several years afterwards and a couple revisions which require surgery. I highly recommend this surgery. If you're an older person like I am now you might not want to do it because all surgeries have risks, And the older we get the more risk is involved. I'm new to this site so I don't know how to communicate with people other than this board but if you have any questions feel free to contact me and good luck. I know having a colostomy can really mess with you mentally. For me it cost me to pretty much stay isolated because I never knew what to expect with it. If you have to live with it you can let you get to wake up every morning and see the people that are in your life that you love. Never take that for granite.🤓

Reply by warrior, on Mon Jan 27, 2020 2:27 pm
Clockman wrote:

Hi,colosomies require alot of getting use to. I used a pouch for years do to a failed kouch pouch. rior. I do not understand why this is not the standard for all of us please but a lot of doctors are resistant to it. 

Warm greetings and welcomes to the site. I understand you are new. Its great we seem to be getting some new people now. Thanks for sharing..

Your comment above seems to need alittle more examination about why an internal pouch isnt " standard". 

By your own experience u mentioned a previous internal pouch system failed. 

I dont know that stats of sucess vs failures but i think from my own reading these internal pouches arent worth the risk. Anyone just getting it without indepth reseach is foolharty to just jump into it.

Some patients can not have these internal pouches because their output is solid not liquid.  The idea of carrying around a tube or hose to help empty the internal is more gross than tolerating an out side pouch..

Also..people with ibd probably should not get internal pouches. Your intestine is diseased.  Whether small or large..removal is necessary and hope are the disease hasnt traveled nor will travel higher in the gi tract.

I am no expert but having ibd over 35 yrs and recently now a permanent ileo has taught me some contradications in this life. Nothing is guaranteed.   These. Internal pounches are not the answer for the majority of folks.

Just my 2 cents worth.  

Welcome aboard.      Warrior

 

Reply by PETey.13, on Mon Jan 27, 2020 3:20 pm

Crossley, Look up the 5 stages of grief by Kubler-Ross. We all go through them again, and again, and again.

Reply by Mtnman, on Mon Jan 27, 2020 3:26 pm

 Hey there I've only had mine 1 year (tomorrow). I have a hernia and the surgeon hasn't said anything and I personally don't want another surgery if I can avoid it but I've gotten used to my stoma. It has ups and downs with leakage. I use a one piece Hollister 89511 it's convexed although my stoma sticks outward the bottom half under the stoma sinks in (my stomach). It works pretty well sealing for about 4 days. I have learned that not to push the poop downward over the lower edge of the cut opening, more gently shaking it down because it's like hydraulic pressure and forces the cut circle of the bag to lift causing it to push under the adhesive ring.

But yeah everytime I have any difficulties I stop and think I'm glad to be alive. That makes the difference when I have issues with the bag, rashes or the stoma protruding as I've lifted too much.  

Hey from Oregon!

Reply by Penguins7, on Mon Jan 27, 2020 6:31 pm

Crossley,  I have had mine for 7 years and I still have my days of resentment with it.  I try and stay positive and look at the ostomy as the solution and not the problem.  I remember I was so sick I used to sleep by the toilet and remind myself of the days when i couldn't leave the house.  Stay well and good luck!  Penguins7

Reply by honestabe, on Mon Jan 27, 2020 6:51 pm

Have had my colostomy 6 years! Saved me! There are people on this that have had stoma for 50 years and still kicking! I’m now having problems with spinal stenosis in back! Can’t walk very far without pain! Good luck! 

Reply by w30bob, on Mon Jan 27, 2020 7:04 pm

Hi Cross,

  As most have stated, feelings for your ostomy will change, no doubt about it.  If anyone thinks they just have the operation and then life is grand they're sadly mistaken.  Of course there are folks out there that were on the verge of death, so anything looks better than that.........so leaks and minor setbacks don't even register as issues with those folks as to them still being alive and kicking makes having an ostomy all roses.  But the rest of us, the majority, feel differently about them as time goes on.  I'm a little over 5 years in and I'm just starting now to accept my shitbag and not think about it 24/7.  I'm determined not to let it consume me, but it takes time.  Whatever you're feeling you're not the first and won't be the last.......it's all perfectly normal.  Wow.......what a strange word "normal" has become in the last 5 years (for me).  Hang in there Cross........you're in good company!

 

regards,

bob

Reply by lovely, on Mon Jan 27, 2020 7:24 pm

Hi crossley8 I have had my colostomy  for abour five years. There are times I get flustrated about it. I think we all do from time to time. But I realize it is a permanent part of me and I have to deal with it. Feelings come ans go according to what is happening with it. You have come to a good place to talk to people that understand. Hope you feel better.



Last edited by lovely on Mon Jan 27, 2020 10:49 pm; edited 1 time in total
Reply by iMacG5, on Mon Jan 27, 2020 9:51 pm

Hi Crossley. Ya know, I think it’s all about feelings. I don’t mean the pain feelings which could control everything. I mean the feelings inside our heads, our hearts and even our souls. I mean the feelings of who we are now compared to who we were; how we accept our situation or maybe we don’t. My wife asked how I felt and I said, “like crap”. She asked what hurt and I answered, “Nothing hurts, well, everything hurts, I don’t know, It all sucks.” That was a long time ago. You question if your feelings are normal. How normal is it to relocate your butt hole to your belly where it’s usually in the way of your belt and, you know. But that’s where we are and for lots of us we are so much better off than we were before, physically. Emotionally, psychologically, well, that might be a different story. I believe talk therapy is wonderful if we could find a real empathic or sympathetic listener. So guess what! I found MAO and began “talking” with a keyboard with some of the wisest, kindest most sympathetic and compassionate folks on the planet. Regardless of where we’ve been, lots of folks here have been there and worse places and found their way back healthier and happier. We really do help each other.
Keep “talking”,
Mike

Reply by Puppyluv56, on Mon Jan 27, 2020 11:37 pm

Hi Crossley,

i am not so sure that I feel anything for this Ostomy! I refuse to allow it to define me. Only once have I cried over it and it was at the beginning when I was leaking everywhere and the harder I tried to get the pouch on correctly, it was not working. I finally found the right pouch system for me and have not had one of those days since. I had my surgery April 2018. What actually has helped my was irrigating. Since you have a Colostomy, you may be able to do this  as well. You irrigate once a day or every other day (everyone is different depending on output)and have no output in between. Check with your Doctor if you think that may be something you would like to try. It gave me my life back!
I know it is quite normal to have ups and downs In our world. Most of us are alive because we have had surgery and sometimes that makes it easier to accept. Accept that you will have them! Just don't let it define you! 
best of luck,

Puppyluv

Reply by britathrt60, on Tue Jan 28, 2020 2:36 am

Hi Crossley

I have had permanent Ileostomy for 20 years...46 when I had it and it did save my life...after 8 weeks I went back to work...my Hubby was still alive and it was ok...my husband was amazing and had no problem helping me with my supplies etc..he passed in 2009 and I just wanted to dig a hole and climb in . now I am 66 and am finding it harder to cope with...I do a lot of reminiscing about how my life was....it is easy to isolate yourself from people and things with it...I myself have become somewhat of a hermit because its easier to be at home which becomes your comfort zone than worry about being out somewhere worrying about a leak...your up and down feelings are very normal crossley...the days you hate it then just hate it....dont beat yourself up....feel how you need to feel at that time...I wish you all the best in this journey and this is a fantastic sight to let off steam...tell a joke...curse a little or just read others stories...

Cheers

Ange

Reply by Bill, on Tue Jan 28, 2020 3:54 am

Hello crossley8.

Welcome to this site and thank you for posting a very pertinent question. Thanks also to all those who have so competently replied and contributed to the discussion as they have covered almost all of the points that I might have posted.

Of course it is 'normal' to have different feelings at different times and in different circumstances. Whenever my emotions are negatively charged, I tend to write rhyming verse. All my rhymes can be found on my profile in the 'blogs' section, and the reason I point this out is that it provides a documentation of the various and changing feelings over time. Unfortunately, when things are not negative for me, I don't have the same inclination to write rhymes, so it seems to be a one-sided picture. Most of the time I am so busy that I don't really think about my stoma, but when I do, then I try to contemplate what it was like prior to the operation and compare the two sets of circumstances. This exercise puts the stoma management in a perspective based on historical reality and helps me to feel less discontented about the whole thing. The very fact that I am still corresponding on here (and writing more rhymes on the subject) is perhaps testament to the fact that I have not fully come to terms with having a stoma. However, I do think that it is very helpful to be able to discuss these things with others who understand the management and the associated feelings that come with this condition. So --- keep posting!

Best wishes

Bill

 

Reply by Clockman, on Tue Jan 28, 2020 3:35 pm
warrior wrote:
Clockman wrote:

Hi,colosomies require alot of getting use to. I used a pouch for years do to a failed kouch pouch. rior. I do not understand why this is not the standard for all of us please but a lot of doctors are resistant to it. 

Warm greetings and welcomes to the site. I understand you are new. Its great we seem to be getting some new people now. Thanks for sharing..

Your comment above seems to need alittle more examination about why an internal pouch isnt " standard". 

By your own experience u mentioned a previous internal pouch system failed. 

I dont know that stats of sucess vs failures but i think from my own reading these internal pouches arent worth the risk. Anyone just getting it without indepth reseach is foolharty to just jump into it.

Some patients can not have these internal pouches because their output is solid not liquid.  The idea of carrying around a tube or hose to help empty the internal is more gross than tolerating an out side pouch..

Also..people with ibd probably should not get internal pouches. Your intestine is diseased.  Whether small or large..removal is necessary and hope are the disease hasnt traveled nor will travel higher in the gi tract.

I am no expert but having ibd over 35 yrs and recently now a permanent ileo has taught me some contradications in this life. Nothing is guaranteed.   These. Internal pounches are not the answer for the majority of folks.

Just my 2 cents worth.  

Welcome aboard.      Warrior

 

I agree 100% these parties are not good for everyone! The Coke pouch first appeared around 1960 and had several revisions of which I experienced several including switching to a mesh enclosure and then you think Staples set of sutures both of which failed. The BCIR Pouch uses your intestines to see around the stoma just under the skin so that when the pouch fills up it restricts the output through the stoma virtually ceiling it off. Until you intubate.True it does have valve slippage problems and possible problems with pouchitis which is controlled with Cipro meds. But as I look back at using the code pouch, and then I failed coat pouch which required external appliances, and now at the last eight years with no external pouches or worries about pouches blowing out and not being able to control the output I believe that would BCIR surgery is the best way to go. Life with an external pouch can be livable and a person have to do what he hast to do and you get used to it but life without a external pouch is way better especially considering. Both surgeries have problems. Bottom line though is do your homework make sure it's right for you before you go to a BCIR. For me personally I absolutely have no regrets quality of life is 100% better

Reply by lovely, on Wed Jan 29, 2020 12:17 am

Hi Clockman, Thanks for the information, but as a more mature person I think I will stick to the outside pouches. Glad it has worked well for you.

Reply by britathrt60, on Wed Jan 29, 2020 1:39 am

Hi Clockman.....sounds amazing..glad it worked out for you.

 

Ange

Reply by Sportster9, on Mon Feb 03, 2020 8:27 pm

I totally get it. It is not easy and I've talked to enough ostimates to know that everyone is different. But for my own experience you are right where I was. For the first few years I was just trying to exist and get through it. But the losses piled up, like not swimming. But it has been 16 years now, I'm coming up on my anniversary in February. I'm still not happy with it but I have adjusted and it's not just about getting used to it, or over it. A lot of it is about finding the best products that work for you. Ostomy product manufacturers love sampling us, so don't be shy about calling and asking for them. Finding a pouch that adhears well and removes easily can make a huge diference. I read the previous entry about the internal pouch, that is very cool and I'm going to look into it. Until something like that can work for me, I have chosen to go the irrigation route, and it has worked really well for me. I irrigate in the morning, takes about an hour. I then wear a hollister closed end pouch, just to be sure. It has a very low profile and does not show under my clothes. The best thing is that if I feel I've had a successful irrigation, which is most days, I can use a Nexcare waterproof bandage instead of a pouch and go swimming. That has changed my life. Going to the pool or beach is now easily doable.

best of luck to you

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